Discussion in 'Research News' started by Tim Hogan, Sep 23, 2016.
Separate names with a comma.
Actually, it definitely does in my experience (blush).
I’ve been in touch with a doctor who agreed to prescribe oxytocin nasal spray for me to try it out. She knows I have a chain saw running full blast in my head and is trying to help me. Anyway, we have found that the spray that was once used for lactating mothers is no longer available.
Amazon I found some oxytocin lozenges to dissolve under the tongue. I’ve ordered a bottle and am going to test it out. The clinical trials are using 9 ml spray 4 times a day. These lozenges are 5 ml each so I’m going to do 2 of them 4 times a day for a week and see what happens. My doctor says they won’t harm me and maybe they will help. Will update you guys later.
Obviously I’ll try anything halfway sane...
I have Oxytocin nasal spray at home, 25ml. Do you think, as per the clinical trial, I should take 9ml each day, or each application? I'm trying to determine how much to take each day.
It depends on what you have. Is it a Rx and has it been refrigerated? If not, it probably is heavily diluted and that means it’s not what they are using in the clinical trials. When I was a doula and my new mothers were using the spray, it was a prescription and had to be refrigerated. It was called Syntocinon. I spoke recently with a friend who is a licensed lactation specialist and she told me that medication is no longer being used nor is it available.
What is yours called and where did you get it? I’m not a doctor so of course I can’t tell you much about this, I’m just going by what I’ve read and that’s not the same as medical advice.
Never heard of Syntocinon being used intranasally in obstetrics.
We (Werribee Mercy - Melbourne) have transitioned over to Carbetocin... wonder if that has the same effect?
Hi Deb, I think the use here would have been considered pediatric and not obstetric since the Rx would come from a pediatrician. It was used to facilitate milk letdown in nursing mothers. I don’t know much about the pharmacology as I was just there to assist the mother.
How about this:
It says shipped with temperature control.
I checked out the link! That’s exactly what I was looking for... but it says it’s for research use only, do you think an individual can purchase it?
I received my Oxytocin lozenges yesterday and today I’ve been doing 2 sublingually 4 times. No idea if this will help or not. I’m not doing this under medical care so I don’t know if I should even be telling anyone. Anyway, since I know it used to be used for increasing breast milk I’m assuming it’s fairly benign.
You're fine, there isn't any law or anyone who's going to go after you since it's not a controlled substance. They just put that there as a disclaimer.
I wonder why this has just recently come back on the radar with a new study, the last being the Brazil one from 3 years ago? Internet searches turn up nothing between then and now. Would be great if there were something to this given it's an available medication.
Not sure about those internet sites for a reliable supply though...
I’ve researched this further, since the Oxytocin lozenges I tried didn’t do anything. I learned that Oxytocin does not pass through the brain blood barrier except through one place high up in the nasal cavity, thus the use of the nasal spray.
I have not been able to find anything more from the clinical trials. I will post if I do.
Thanks for looking into it. Update on my end - I'm now taking part in the NYU study so can report back when it's complete. What I can tell you is that the spray is not readily available - it's made to order by a compounding pharmacy, needs to be kept refrigerated and (per the label on the bottle) has a relatively short expiration date.
Wow that’s awesome news! Yes I think the spray you’re using is nothing like what some have ordered from online sellers which is why they never got any relief. The Rx spray we used to have for nursing mothers was as you described, had to be refrigerated and expired quickly. It’s no longer available according to my friend who is an IBCLC. Do keep us posted! I’m so envious of you!
That's good. I'm waiting for your report.
I've got some Oxytocin nasal spray so am going to give it a try.
@ploughna, are you still participating in the Oxytocin study? I’m feverishly awaiting any news from that study that you can share!
I completed the study a month ago now, but wanted to wait a while before posting so I could better assess before/after.
Some background - until mid-last year, my tinnitus, while loud and very annoying (4/10), was in one ear only and quite stable so I had habituated to it pretty well. However, an accidental noise exposure (something that probably would have had no impact on someone with uncompromised hearing) caused my tinnitus to develop in both ears, jump in amplitude (5-8/10) and become extremely variable and reactive to sounds. I never knew from one day to the next whether I was going to wake up (assuming I was able to sleep) to a 'good' day or 'bad' day! Habituation was impossible and I was desperate for a solution.
Initially, I saw no improvement from the Oxytocin, but they had started me on a low dose, so this was gradually increased over the course of the study. I did start to have some 'good' days again (4/10 and even lower at times), but always very unpredictable.
E.g., I might have a good week of mostly 4 or 5/10 and start feeling good about things only to have a setback the following week where levels were much higher again (for no apparent reason).
By the end of the study though, I am having more better days than bad. However, now that it's a month since I've taken it, I'm not sure there's any difference because I'm still doing better (3 days in a row this week 4/10, and even slightly lower at times during the day), so either I've improved naturally over time or there's some kind of longer lasting effect. I did reach out to the doctor 2 weeks ago (this was a 'bad' week) to ask about an ongoing prescription for Oxytocin, but then the following week was quite manageable again, so I'm going to wait a bit before pursuing further.
For what it's worth, the doctor I worked with did indicate that other patients were having quite good results but in my case, if I'm to be honest (and believe me I want this to work), it seems somewhat inconclusive other than to say I am definitely in a better place than at the start. If only I could find a solution for the 'reactive to sound' aspect which is still there, I'd be very happy.
I'll be very interested to see the complete study report when it's published.
So does the spray have to be refrigerated? Did you carry it around with you all day?
Yes, it must be refrigerated, but OK to have at room temperature for short periods of time. The instructions were to leave it come up to room temperature for spraying, and then put it back in the refrigerator again.
Dosage was 4 times per day, which was not a problem for me working from home and not travelling anywhere much due to the pandemic. If I needed to travel, I was given a cooler travel pack to bring the medication with me.
@ploughna, being even a little improved sounds wonderful to me! Do you have any idea when the report from the study is going to be made available to the general public? Will you be getting a copy of the report since you participated in the trial? I’d really like to keep informed about this!
Did you try it? What results did you get?
I think they are still recruiting.
Here's the link. I've mentioned this study to doctors and have been laughed at.
High Dose Oxytocin Nasal Spray for Treatment of Tinnitus
Oxytocin didn't help my tinnitus.
Did you try the refrigerated Oxytocin nose spray?
Were you in the study?
Hi @ploughna - any feedback on this? Are the results out? And how are you getting on?
The trial is still ongoing, although I'm finished since last March (see my earlier post).
Funny you should ask just now as only today I had a follow-up appointment with the doctor running the trial who agreed to allow me start taking Oxytocin again on a regular basis, the difference this time is that unlike in the trial, I'll know exactly what dose I'm on and when.
The doctor told me he had some patients where it's been a gamechanger for (one patient in particular whose tinnitus was caused by an ear infection), whereas others were hit or miss, with no way to predict who it might work for versus not. This is why he decided to run the trial and see who it might be an option for (people with noise damage vs ear infection, drug induced, etc). Until the trial is complete and unblinded, he won't have these answers.
My tinnitus is very bad at the moment - highly (and unpredictably) variable (ranging from merely loud to unbearable), and seems noise dependent - e.g., I have to wear earplugs driving or the road noise will exacerbate it terribly. I can't watch TV at normal level, and exercise will aggravate it also. It used to be a manageable constant level until an additional accidental noise exposure last year which put me into this current state!
@ploughna, were they any side effects from the spray?
I had bloodwork and urinalysis done regularly during the trial with no issues found at any stage.